The creation of a sweeping autism database by the U.S. Department of Health and Human Services (HHS) has sparked significant backlash from autism researchers and advocates due to fears of misuse. Although HHS denies it is a registry, the agency plans to use the database for a $50 million study on autism. A petition opposing the registry garnered nearly 50,000 signatures in a day, highlighting parental concern over privacy and the quality of care for autistic individuals. Critics argue that the distinction between a registry and a data platform is superficial.
I'm a quiet person who likes to just be in the background...But I feel really, really, really strongly about this, and I have to speak up for my kids who can't speak for themselves.
They're saying it's not an autism registry, but it sounds like they kind of just changed the name of it.
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